Today is the start of feeding tube awareness and I wanted to post about my families small experience with feeding tubes. Aiden was on a feeding tube for only a few months those months gave me a glimpse into the world of being a mom to a tubbie. Now I maybe biased but the feeding tube he was on had to have been one of the harder ones to deal with. He had an NJ tube ( http://www.chop.edu/service/radiology/interventional-radiology/nasojejunal-nj-tube.html ). This feeding tube us bot meant for long term use and skips the stomach and jejunum(small bowel).Aiden had this type of feeding tube because he silently aspirated. Due to his heart surgery it caused the nerve that helps swallowing become numb. I remembering when I watched him have a swallow test. The swallow test uses barium and x-rays. Basically it can show where liquid goes after you swallow. Some of the liquid that drank went down his windpipe. The scary part was he did not react when it happened. No coughing no nothing! Now that was bad if I had feed him via a bottle at that time he could have drowned.
As a parent that was a very scary thought. Eating could have killed him hence the NJ tube. He got that tube due to his aspirating. They did not want it in his stomach because he could spit it up and aspirate on it. The NJ tube was important but stressful! It clogged a lot and each time it did I had to take him up to PCMC an x-ray was required to place it. It never clogged during normal hospital hours so the trip ended up in the ER. Each time a different person would ask questions on why was on it. The questioning got old fast. Some would claim it shouldn't be clogging this often. Cannot say how happy I was when that tube was gone. The Doctors who did not know what Aiden had gone through acted like I was doing something wrong.
Feeding tube awareness is important. I know many people look at those who have feeding tubes as though there is something wrong with them, terribly wrong. My Grandpa had a feeding tube after a life saving surgery for pancreatic cancer. He had a whipple procedure and needed time for his digestive system to heal.
Though I hated the time Aiden was on his I know the tube saved his life and I am thankful for that but I do not miss it. It helped us along our heart journey. If you would like to read more about feeding tubes click on the following links.